I am Living with Neuroendocrine Cancer

by Beth Leonard

I am living with neuroendocrine cancer. A rare abdominal cancer (0.5% of all abdominal cancers) that I was diagnosed with in September 2016. So far, I have 2 (yes 2) primary site neuroendocrine tumors (cancer that is the same type but initiating in two separate places of my body that didn't travel via metastatic means) - such a rarity for even this cancer that there is NO documented statistical data. The only statistics we really have is for people with one primary site who generally find this cancer in their 60s. But wait! There's more! I also found out that I have Lynch Syndrome – a – yup you guessed it – a rare genetic syndrome that significantly increases my chances of getting colorectal cancers and some other ones that are suspiciously similar to locations for neuroendocrine cancer. Please understand that I DO have a cancer that is incurable on the one hand, but slow growing on the other. I will likely NOT ever go through chemo because it is ineffective. The only way to prevent metastasization is literally playing whack-a-mole - finding and cutting it out. So that may mean unexpected surgeries. I have a 96% chance of them finding more within the next 10 years - 80% chance of which will be in the first 5 years. My tumors are currently escaping standard scans. Which means it is possible I already have metastatic cancer that isn't even showing in the scans. Lucky me! I do have nerve pain that frequently makes it hurt to even walk, the diarrhea, the abdominal pains, the weird endocrine system related symptoms of goosebumps, feelings of skin burning, hives, itching with no hives, exhaustion; as well as the emotional effects such as anxiety, depression, hopelessness, and others.

However, I try not to dwell in statistics, and I am full of positivity and don’t really dwell on all of that! So how do I deal with it all?

I started with Educating myself to better self-advocate and think outside of the box - I am a zebra after all! Body awareness is key! Not dwelling on the what ifs, the worst cases, and the other zebras who are nothing like my unique case. There is a balance to obtaining information, but not drowning in what I find. Don’t look at the Internet every day!

I began a blog on Facebook: Living with Neuroendocrine Cancer: @LIVEwithNETS; Building an “army” of #ZebraSupporters - friends, family, and professionals. A journal to get my jumbled up, stressed out thoughts out of my mind and into the world to maybe help even just one person know that they aren't alone - even when it feels like no one understands this rare cancer and the curveball it throws you.

I started a Bucket List – cliché I know – but I LOVE it, and I find friends and family members to help me with ideas, and to help me carry out. My bucket list includes lifetime, annual, seasonal, and monthly bucket list items. And if my #ZebraSupporters formally add it, it must be included (so PLEASE NO JUMPING FROM AIRPLANES!! LOL)

I am finding activities to take up my time when I am energized, such as Aerial yoga and paddle boarding to find my peace. Painting when I need to "escape" and may be more tired or overwhelmed.

I am Learning to admit when I am exhausted, in pain, or need help - learning to STOP being wonder woman all of the time. A little talk therapy and psychiatric care to minimize anxiety and keep depression at bay. Crying it out when I need to!

Realizing that I can still be ME, even though physical pieces are constantly being cut out by Maintaining my frequently sarcastic humor, and joyous laughter and staying that "weird single mom" that my kids still enjoy being around. Keeping that sense of humor that is inappropriately appropriate just for me!

I started helping others and paying it forward by Volunteering for those less fortunate (from regularly mentoring for a child in the local family services program to helping an older woman cross the street).

Lastly, ensuring my physical well-being is taken care of too: Land and aquatic PT, dry needling, acupuncture, and massage therapy help significantly! In addition, to medications - having a dynamic approach, a team of specialists, and most importantly, a fantastic primary care doctor who is my conductor and takes that burden off of my shoulders.

As you can see, I am LIVING with this cancer; my approach works for me, but hopefully it will help you too. That’s all for now!